Teens With Epilepsy Have a Voice!

The Epilepsy Foundation promotes advocacy on all levels, including teens. The Epilepsy Foundation’s “Teens Speak Up!”program is a wonderful opportunity to teach young men and women living with epilepsy that what they have to say is important and that they have a voice. I have been exceptionally lucky to participate in this program. It was an experience I’ll never forget!

In the Epilepsy Foundation’s monthly Epilepsy Advocacy Newsletter, another TSU participant’s experience was featured in their “News From the Hill” section. Jessica Waters describes her experience with Teens Speak Up! and the First Lady’s Reach Higher Initiative and what it has meant to her life in the article below.

Hello,

My name is Jessica Waters and I have lived with epilepsy since I was 11 years old. Since I was first diagnosed I have been an advocate for the epilepsy community and want everyone living with epilepsy to #DareTo live to their fullest potential.

In 2014 I was one of 40 lucky teens living with epilepsy who participated in the Epilepsy Foundation’s Teens Speak Up! conference. We learned how sharing our story on Capitol Hill and with local elected officials can advance the epilepsy community’s policy priorities at the federal and state level. I’ve remained actively involved with the Epilepsy Foundation and this past summer I was invited to the White House as part of the Reach Higher Initiative. It was a great experience where I met with dozens of teens who had “beaten the odds” to graduate high school and were getting ready to start their first year of college. The President and First Lady both spoke to us and urged us to continue to work hard and beat the odds. It was a truly inspiring event and I’m happy to say I’ve just finished my first semester of college and am excited to start my second!

Jessica (Right) at the White House with another teen with epilepsy, Gabe (Left), and Brian (center), a member of our staff.

While I’ve been able to meet with my legislators and share my story in person, taking action online and sending emails is also incredibly important to benefit our entire community. You’ve already taken the first step by signing up for the Speak Up Speak Out network and it is your advocacy that has helped the Epilepsy Foundation bring about amazing changes throughout the country during the past year.

One of the biggest advocacy victories this year is the passage of the Improving Regulatory Transparency for New Medical Therapies Act (H.R. 639). On Wednesday, November 25 President Obama signed H.R. 639, which will help bring new medications to individuals who need them faster! The Epilepsy Foundation was a big supporter of this bill and our community really spoke up to encourage Congress to pass it, so thank you all!

However, there is still more work to be done. Our community needs to continue to speak up and urge our legislators to support the epilepsy community’s policy priorities. Congress is working to finalize appropriations for next year, and we need to encourage them to continue funding epilepsy programs at the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH). You can learn more and call your legislators at http://bit.ly/EF16Fund. Please share this with your friends and family and urge them to sign up for the Speak Up Speak Out list at http://bit.ly/EFSignUp so they can join us as we advocate for everyone living with epilepsy.

Thank you all for the work you’ve done and happy holidays!

Jessica Waters

Way to go, Jessica! Thank you for sharing your experience with all of us!